Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change

Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change

This report is based on the results from the 2019/20 IBD UK Benchmarking, which brought together the experiences of over 10,000 people with Crohn’s and Colitis and 72% of IBD services across the UK.

A new Benchmarking round took place in 2023 and the Patient Survey and Service Survey closed in September. An updated report based on this data will be released in 2024.

The report based on the 2019/20 survey results revealed that care urgently needed to be improved. In particular:

  • Adults and children were waiting too long for a diagnosis of Crohn’s or Colitis
  • The wider symptoms of Crohn’s and Colitis, such as pain, fatigue and emotional wellbeing were often not addressed
  • People were not getting specialist advice and treatment quickly enough
  • There were not enough specialists, including IBD nurse specialists, dietitians and psychologists and care was often not joined up

Download the executive summary or full report below to find out more.

This report provides clear calls to action for political decision-makers across the four UK nations, for NHS commissioners, managers and IBD services and for health professional bodies and patient organisations. If implemented, these have the potential to transform IBD care for the future. These results, alongside the local service reports and our resources offer a practical approach to service redesign and vital recognition of the specific needs of the estimated 500,000 people living with IBD across the UK.

If you are living with IBD, you can find out more about getting involved in making better care a reality on the Crohn's & Colitis UK website.

Thank you to all IBD teams and adults and children with IBD across the UK who took part in the surveys. Without your support this report would not have been possible.

Watch the recording of our launch event for Crohn's and Colitis Care in the UK: The Hidden Cost and a Vision for Change on Tuesday 27th April 2021 below and hear from key influencers sharing best practice and their views on how IBD service provision can adapt in the midst of the pandemic and beyond.